Recovering from Steroid Fatigue!

I don’t want to say anything further before I am sure, however I think I have figured out my mystery disease! I will know more after Tuesday.

I am on the final level of titration for the steroids. Thank goodness! I will write more about what they helped or didn’t help with sometime, but for now, I will just say they made me so incredibly tired. At this lowest dose, it isn’t quite so bad, but they also don’t help with most symptoms they were helping with. The level of fatigue I feel today is not a level I thought I would ever be grateful for, but I sure am! I got a bit overexcited and used all of my spoons by 3:00 PM (and I woke up at 11:30), but oh well.

I actually do not feel any negative emotions about currently being in pain, exhausted, dizzy, and unable to think. I don’t mind I had a fever for awhile. Why? Well, because I feel industrious. Alternating with rests, I visited with my sister for a bit, did my physical therapy, printed off some information, lightly picked up the house, and finished some cooking I started yesterday. It may not sound like much to you, but to me, that is a busy day. I am proud of myself and grateful. Now I am out of energy. If I’m not careful, I won’t have enough to eat and digest dinner or do my bedtime routine, so I plan to rest until bedtime.

On the steroids, I felt this horrible but all I had to show for it was having gotten out of bed, struggled through physical therapy, and fed myself. I think being on the lowest steroid dose combined with getting IV fluids yesterday both contributed to my Superwoman abilities today. Even if I am tired tomorrow from today, I will be alright with it. Feeling horrible is much easier to weather when you have something to show for your day aside from your continued existence!

18 thoughts on “Recovering from Steroid Fatigue!

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  1. Oh Jackie, it is ALOT for me! I have been there and it does feel like such an accomplished day when you haven’t been able to do much. I will be waiting to hear more about your mistery disease.

    Always sending you good vibes and keeping you in my prayers.

    Keyshla (*.’)

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    1. It is always nice to hear someone who understands how my day which consisted of tasks normal people wouldn’t count as doing anything is an accomplished day. ๐Ÿ™‚

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  2. Can’t wait to hear what happens Tuesday. I am so happy for you that you are finally getting some results. I know how hard you have worked and researched and getting some results is amazing!! Love you…

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  3. I have an autoimmune disease called Polymyalgia Rheumatica. I have been on steroids for 2-1/2 years, as high as 40, but have been tapering since January. I’m down to 7.5 mg, tapering about 1 mg per month. High doses make me jittery and irritable, not to mention gaining weight, but I have to increase every time I have a flare. I’m really hoping to get off this stuff… it’s nasty.

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    1. My grandpa had Polymyalgia Rheumatica so I have actually heard of it. I’m sorry you have had to be on steroids so long! It is great you are down to 7.5mg from being on such high doses. I hope you continue to be able to taper down until you can be steroid free. I seem to be the opposite of the majority of people and get extremely tired from high doses. They are my new favorite sleeping pill!

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  5. I hope you get the answers you’ve been waiting for. I hope to get mine on Sept. 11th when I go back to my new rheumatologist and get the results of all the tests she did. We’re looking for a name to put on the autoimmune disease I have. I wish you the best on your journey. Take care. ๐Ÿ™‚

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    1. I hope you find out a name, or at least which autoimmune disease your symptoms seem most like. Having a name for what has been causing so many issues feels good. Don’t forget to get copies of all your labs. ๐Ÿ™‚ Good luck!

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      1. I’m hoping and praying that when I go back to the rheumatologist this week, she finally will have some answers. She said I definitely have something by the medical records I brought her and by what I told her about all my chronic illnesses. I don’t care what you call it, just give it a name so I can get the proper treatment before it’s too late. My body is literally attacking itself. My hematologist said I should see rheumatology to be considered for a serologically negative Lupus. I always get copies of my lab work. I’ve been doing that for years. They’ll tell you everything is fine and then you get your records and see like 15 things out of whack. We must be our own advocates. I’ll let you know what I find out. don’t have my calendar right in front of me, so I can’t remember what day my appointment is. I know it’s Wednesday or Thursday. Did you get any answers yet? Good luck to you, too. ๐Ÿ™‚ Keep in touch. ๐Ÿ™‚

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        1. My doctor also thinks I have some sort of lupus like disease. There’s a diagnosis called “incomplete lupus” but I’m not real sure what I think. Last week, I found out a lot of my problems are Sjogrens Syndrome.

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          1. I’m sorry, as I know Sjogrens Syndrome is no good, either. I sure hope I get some answers on Thursday when I go back to the rheumatologist to get all my test results. Take care. ๐Ÿ™‚

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